Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 1101–1125 of 4332 publications
Psychiatry and interdisciplinary pediatric palliative care: a scoping review
BACKGROUND: Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC) teams are often responsible. This scoping review aims to inventory the most curr…
Psychologists as Pivotal Members of the Pediatric Palliative Care Team
Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet…
Psychosocial factors affecting the quality of life of parents who have children with home mechanical ventilation
INTRODUCTION: Most children with medical complexity have to live with home mechanical ventilation (HMV). Undertaking the care of a child with HMV creates a psychosocial burden on parents. This study investigated the impact of selected potential determinants on…
Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates
Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public …
Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions
CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL).
OBJECTIVE(S): To examine hospital performance on EOL quality measures and to describe healthcare serv…
Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL
A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and adolescents with …
Quality of Outpatient Pediatric Palliative Care Telehealth: A Retrospective Chart Review
CONTEXT: Studies suggest the feasibility and acceptability of telehealth in outpatient pediatric palliative care. However, there is a need for data that describes the implementation and quality of telehealth, relying on objective and validated measures. OBJECT…
Racial and Ethnic Disparities in End-of-Life Care of Children Undergoing Terminal Extubation in ICU
INTRODUCTION: Among elderly adults, significant racial disparities in hospice and end-of-life treatment intensity have been shown. This single-center secondary analysis was performed on data collected as part of the DONATE (Death One Hour After Terminal Extuba…
Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morb…
Racism in Pediatric Serious Illness and Palliative Care: A Scoping Review of Qualitative Research
Context: Racial disparities in health outcomes have historically impacted Black and Native American children with serious illness, yet little is known about how racism shapes the healthcare experiences of these families. To improve care experiences for this po…
Recognising uncertainty: an integrated framework for palliative care in perinatal medicine
In perinatal medicine, the number of babies with life-limiting or life-threatening conditions is increasing and the benefits of providing palliative care with a holistic, interdisciplinary approach are well documented. It can be particularly challenging, howev…
Reimagining Respite: An Interactive Session Aimed at Improving Pediatric Respite Care Through Idea Exchange
Outcomes: 1. Using a case-based approach, participants will self-report the ability to describe challenges faced by families of children with medical complexity in accessing respite care services that meet their needs, distinguish which of those challenges are…
Respecting Spirituality During Extubations: Holding Space for Miracles and Legacy with Reactive Comfort Plans
Baby M experienced hypoxic ischemic encephalopathy with four subsequent unsuccessful extubations. He would not survive without potentially irreversible long-term ventilation. His parents lovingly decided against interventions that would not "fix" his underlyin…
Role of Pediatric Palliative Care in German-Speaking Centers for Heart Transplantation
Background: Pediatric palliative care (PPC) aims to improve quality of life for patients with life-limiting diseases and complex symptoms irrespective of cure-directed therapy. Generally an early integration of PPC is recommended. This is also the case for ped…
Scandinavian perspectives on life support at the border of viability
Advances in neonatal medicine have allowed us to rescue extremely preterm infants. However, both long-term vulnerability and the burden of treatment in the neonatal period increase with decreasing gestational age. This raises questions about the justification …
SCOPING REVIEW OF THE BARRIERS AND FACILITATORS TO PAEDIATRIC PALLIATIVE CARE REFERRAL, AND INTERVENTIONS TO IMPROVE ACCESS
Objectives Palliative care is an essential component of national health systems and should be available to all people irrespective of age.1 Despite this, a large proportion of children and young people (children) worldwide who require palliative care do not re…
Scoping Review on Transitions in the Context of Pediatric Palliative Care
Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be bewilderi…
Self-Assessed Educational Needs of Chinese Pediatric Clinicians Regarding Pediatric Palliative Care: A Cross-Sectional Investigation
Background: An important first step in enhancing professional palliative care training is to investigate the educational needs of pediatric clinicians in this field. The aims of this research were to analyze the extent of end-of-life care experience of Chinese…
Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates
Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations rather than e…
Shared decision-making in pediatric palliative care in the Netherlands
Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals of care an…
"She was finally mine": the moral experience of families in the context of trisomy 13 and 18- a scoping review with thematic analysis
INTRODUCTION: The value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes. METHODS: We conducted a scoping review to summarize the available empirical literature on the experiences of families i…
Short Term Coping-Behaviors and Postpartum Health in a Population-Based Study of Women with a Live Birth, Stillbirth, or Neonatal Death
Objective: Responding to the National Institutes of Health Working Group's call for research on the psychological impact of stillbirth, we compared coping-related behaviors by outcome of an index birth (surviving live birth or perinatal loss - stillbirth or ne…
Short-term Non-invasive Ventilation for Children with Palliative Care Needs
Objectives: Non-invasive ventilation (NIV), namely continuous positive airway pressure (CPAP) and bi-level positive airway pressure (BiPAP), delivers mechanical ventilation without endotracheal intubation. Short-term NIV (planned for <21 days during initiation…
Simulation, Storytelling, and Pediatric End-of-Life Care: A Continuing Professional Development Approach for Nurse Residents
Background: Providing end-of-life (EOL) care to pediatric patients and their families is challenging. Newly licensed nurses, especially those working with the hematology/oncology population, have little to no experience providing the specialized care needed fo…